ArticlePalliative medicine2024
Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers.
Article in Palliative medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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Who cites it
8 citing papers in PubMed.
- "Reading level is just one component": best practices for cognitive debriefing patient-reported outcome instruments with pediatric populations.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Review
- What are the symptoms and concerns of young adults living with life-limiting conditions and how well are they captured by patient reported outcome measures? A mixed-methods systematic review and framework synthesis.Palliative medicine · 2026Review
- Translation and validation of the Portuguese version of the "Care of the Dying Evaluation".Revista da Associacao Medica Brasileira (1992) · 2026Observational
- Understanding what matters to young people with life-limiting and life-threatening conditions: a qualitative study to inform the development of a young person end-of-life capability measure.Social science & medicine (1982) · 2025Article
- What Constitutes High-Quality Paediatric Palliative Care? A Qualitative Exploration of the Perspectives of Children, Young People, and Parents.The patient · 2025Article
- 'How low can you go?' Developers' perspectives on involving young children in the development of patient reported outcome measures.Journal of patient-reported outcomes · 2025Article
- Developing a Theory of Change and Implementation Plan to implement a novel child- and family-centred outcome measure in paediatric palliative care.Palliative medicine · 2025Article
- Development of a child and family centred outcome measure for children and young people with life-limiting and life-threatening conditions: progress to date on the Children's Palliative Care Outcome Scale (C-POS:UK).Palliative care and social practice · 2024Article
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Authors and funding
11 authors.
Funding
Abstract
backgroundThe Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing.
aimTo cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability.
designCross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. SETTING/
participantsChildren 5-⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites.
resultsForty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important.
conclusionCognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.
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